I Live a Life Like Yours

I started Jan Grue’s new memoir listening to his story on Audible. It’s titled “I Live a Life Like Yours.”

Oh, no Jan. You so do not.

I’m walking listening to his story. Free to take a step, not giving a moment’s consideration to how I keep my balance. And then following this step with another and another and another.

Suffering from Sciatica DK? Put out a bit? YOU are suffering?

Grue was diagnosed as a child with a rare form of spinal atrophy. As Michael J. Fox explains in his book review, “all of the wins in his life are come-from-behind —  a person who is much more than what others see. He discovers that “to be stared at, gawked at, is …to be situated in a narrative that has already been written, and that is told by others.” “The world,” he says, “perceives a body with frail arms, legs locked into certain angles…in a large bulky wheelchair” as not…a whole man…He offers messages of wisdom that will resonate long after you’ve finished the memoir. “At some point or another I stopped thinking about myself as someone who needed repairing.

Dwight Garner is his book review describes “A Life Like Yours” a quietly brilliant book that warms slowly in the hands. And that it does. I, highly recommend the book.

Let me close with a passage from his memoir.


Since an early age, I had known that I had spinal muscular atrophy… I would like to think myself away from my body, away from my injured, worn ankles. But there is no me that exists apart from this body, in some unmarked form. That body would have lived an entirely different sort of life. And yet it haunts me. It casts another kind of shadow. I shut my eyes and go skiing each winter, I run 10K each morning. I dash off to another country at a moment’s notice, grab my carry-on, run out the door and hail a taxi, make my way quickly through the security check and sprint to the gate. I haven’t made arrangements for where I’ll stay when I arrive, I climb into a taxi and simply say: Drive me somewhere I haven’t been before.

I open my eyes.

— Jan Grue, I Live a Life Like Yours: A Memoir. B. L. Crook (Translator). (FSG Originals, August 17, 2021)

Walking. With MJF.

Monday morning, 5 a.m. The night before, wind gusts up to 60 mph, heavy rain, and a tornado set down a few miles away. Trees down. Thousands without power in Fairfield County. The Kanigan house?  Silent. The lights burn, the furnace hums, Susan and Eric sleep. All is well.

I walk.

Cove Island Park.  There’s no evidence of havoc on the beach. It is swept clean. No drift wood. No trash. No humans. The sand is firm underfoot. I leave faint shoe marks. I don’t look back.

I never look back. 

It’s likely why the title of his book, No Time Like the Future, caught my attention. Michael J. Fox‘s new memoir, is pumping through my earbuds.

29 years old: Parkinson’s.

58 years old: Spinal cord surgery (unrelated to Parkinson’s) followed by long term rehab.

“I got grim,” he said in an interview in 2019. No shit.

I’m Canadian, like MJF, without the famous part.  He was born 5 months earlier, and yet handed a deck of cards that I’m not sure I could ever play.

He’s written 3 other memoirs titled “Lucky Man“, “Always Looking Up: The Adventures of an Incurable Optimist” and “A Funny Thing Happens on the Way to the Future.” You get the picture. It’s almost as if he was built to take the blows.

He’s narrating this new book.

Shame, that’s what I feel, as I have to slow down the narration speed on Audible to catch each word. Most with Parkinson’s speak slowly, but not MJF. He speaks rapidly, with certain words trailing off at the end of certain sentences. Actor. Married, 30 years. Father. Prolific fundraiser for Parkinson’s. Writer. Narrator of his own books. Super Man.

I walk, and I listen. [Read more…]

I’m only now starting to fully understand is that this is an inside job. It only works if I believe.

But what I’m only now starting to fully understand is that this is an inside job. It only works if I believe. I’ve always been confident, positive, doggedly determined; but doubt is beginning to mitigate my conviction. Who am I to think I can accomplish this, when so many have struggled with similar setbacks; some with Parkinson’s, some with the aftermath of spinal surgery? I may be the only one who has taken on this particular two-headed beast…

I have to learn to walk again; to reclaim my mobility, remaster my motion. I consider this fundamental to my therapy —  for me, it all starts and ends with walking. And I understand that it’s more complicated than that. So many tiny disciplines have to be observed, and neglected muscles and ligaments need to be restored. I’m exhausted by the effort I’ve already put in at Johns Hopkins, and daunted by how much work I still have to do. It’s like being nibbled to death by ducks.

Back in the days of carefree ambling, I would have considered the topic of walking to be rather pedestrian. Now the acts of stepping, strolling, hiking, and perambulating have become an obsession. I watch Esmé gliding through the kitchen, grabbing an apple while opening the fridge door for a coconut water, closing it with a quick shift of her hip and pirouetting out the swinging door at the other end of the room. Down in the lobby, my neighbor and her daughter are quickstepping to catch a taxi. I spy on a man walking with a slight limp, which he counterbalances with a bag of groceries. I secretly watch the way they all move. Easy, breezy, catlike, or with a limp, every one of them is far better at it than me. It may be that the most difficult, miraculous thing we do, physically, is to walk…

It’s tough. With PD and the aftermath of the surgery, something as simple as remaining upright is often sabotaged by a rogue army of misfiring neurons. I try to stay organized. I have memorized a litany of admonitions, not unlike my golfer’s list of swing thoughts: Keep my head centered over my hips; hips over my knees; no hyperextending; stay in line with my feet; eyes forward; shoulders back; chest out; lead with the pelvis. All of this kinetic vigilance can dissolve in a nanosecond of panic, or come apart with some other distraction. A tiny nervous jolt or spasm, and like a house of cards in a sudden gust of wind, the only messages that make it through the debris are: Don’t fall. Don’t fall. Don’t fall

—  Michael J. Fox, No Time Like the Future: An Optimist Considers Mortality (Flatiron Books, November 17, 2020)

%d bloggers like this: